Ever since I was six years old, I had complained to my parents that my heart hurt. This was a daily issue, getting sent to get EKG’s constantly and every result came back normal. Doctors refused to take a deeper look into my complaints and blamed the pain on being a stressed out child. Are you serious? What does a six year old have to be stressed about? I had a happy childhood, but the doctor is the expert – so life continued on.
These “heart pain” complaints continued until the age of 19. I had other symptoms during this time as well, but never put the symptoms together because they were so random and didn’t seem to have a noticeable correlation. These symptoms included severe constipation, sweaty hands and feet, and at times I had high blood pressure. These symptoms were all given to the doctor that blamed my diagnosis on stress. He did not take the time to put the symptoms together either.
If you do a quick Google search with all of these symptoms, I guarantee you could be a better doctor than mine and diagnosis me.
One day after working out, I became very ill and starting throwing up. I went to the hospital and was told “You’re not an athlete. Why are you pushing your body so hard? You are giving yourself an anxiety attack.” With that, he held out his hand and said “Here’s some samples of Zoloft. I’ll write you a prescription.” After two days on this fine little drug, my symptoms became worse. I cried to my mom to find me a female cardiologist who would not blame my symptoms on stress. She found me one of the best who happened to be 10 miles from our house. We called her office and she had an exam room waiting for me.
As I walked in throwing up, feeling like my heart was going to explode, she ran the EKG. She saw no issue with my heart, but wanted to take a further look into it. She asked for all of my symptoms again and said “I doubt it’s this cancer, but let’s rule it out. Have you heard of Pheochromocytoma?” To which my mother and I replied, “No, but let’s check.”
The next day she had her ultra-sound technician take a look at my abdomen. It was in those short two minutes, the ultra-sound tech said “What was she looking for exactly?” My mom and I shouted “PHEOCHROMOCYTOMA!” To which this technician replied, “She hit the nail on the head.”
I cried. Not out of sadness, but because someone finally listened to me. I had a diagnosis.
The cardiologist also happened to know the only surgeon in all of Southern California who had done surgery at the time on this disease. He happened to be only about 20 miles from our house. Everything was falling into place. We drove straight to the hospital thinking that we would go right into surgery and I’d be fixed.
From there, I was told that I had two tumors, one on each adrenal gland. One tumor was five pounds – the size of a softball, the other was six pounds, the size of a grapefruit. Wow. A lot more serious than anyone thought!
Fast forward about three weeks, my blood pressure and pulse were at a level of nearly stroking out and surgery was too dangerous of a situation to put me in. I was on life support during this time and put on a morphine drip. My heart had grown to rely on the production of adrenal pumping from the cancerous tumors growing on them. The cancer board at the hospital was concerned that as soon as they removed the adrenal glands, my heart would stop. The cancer board voted to put me on a morphine drip and let me go peacefully.
Obviously, this didn’t happen because I am still here today. My surgeon refused to allow this without trying to save me. He and his anesthesiologist started looking through their old textbooks and came out with the idea in the middle of the night to put me on an epidural.
I’m no doctor, but from what my surgeon tells me looking back on the surgery is that the epidural would stop the shock of the adrenal removal on the heart. It’s just so crazy, it may work – and IT DID!
I woke up from surgery, looking for my mom who was sitting next to me every second of every day and she had gone home. I asked my nurse why she finally went home and she replied, “Honey, don’t you know? You’re out of surgery?” I survived.
We’ll fast forward a bit through the rest of my battles.
The next worry the doctors had for me was that the cancer possibly spread. They wanted to remove my thyroids. Pheochromocytoma attacks the entire endocrine system.
If it’s on your thyroids, they’re concerned of lymph-nodes contracting cancer as well. We were proactive and decided to remove the thyroids before that became a possibility. While in surgery, the found more cancer nodules on the thyroid, as well as the right side of lymph-nodes in my throat. They removed everything in there. I dodged another bullet.
A year later, a small tumor was found on the lower area of my right lung. They did a laparoscopic surgery to remove it. Easy peasy. Let’s move on.
A year after that, they were tracking a small tumor on my liver that began to grow. Another laparoscopic surgery in the books.
Another year later and we get a little surprise. An adrenal gland grew back. This doesn’t just happen. It was the pheochromocytoma again. My surgeon opened me back on, a much smaller incision than my first, and removed the adrenal gland.
A few days later and things were starting to get back to normal. I cooked my boyfriend at the time a delicious, comfort food packed dinner one night (we’ll get into why diet is so important and helped me finally kick cancer’s a$$ in another post) and I had the worst stomach ache after. We hadn’t been together for that long, so the idea of sitting on the toilet in his house just felt humiliating and wrong. I tried though and got nada. I figured maybe it was heart burn, but holy moly – it really freaking hurt. We both went to sleep that night and after a couple hours I couldn’t take the pain anymore. Not wanting to go back to the hospital, he took me to CVS and bought me something to help the stomach ache and we walked a few times around the block. Nothing was helping. I finally said we need to go to the hospital.
We arrive and I start vomiting, a lot. My surgeon comes in (in the middle of the night, he’s the best) to see what’s going on. He says to me “Say the word and I’ll open you back up and see what’s going on.” As much as surgery sucks, I said “Do it.” He opens me and can’t find any issue. Possibly just a bowel blockage which looked like it would clear itself. A couple days later, still in agony, I said look again. More exploratory surgery found that during that short time, my colon had completely deteriorated inside of me. My surgeon went to lift it out and it fell apart in his hands. They had to remove about 10 inches of my colon and clean up all of my insides to prevent infection. They stitched me back up and I woke up feeling much better, and shocked at what was actually going on. How did I bear that much pain? The human body is amazing and has quite a will to survive.
This all happened over a five year span. It’s been over five years now and I’ve been cancer free since. I’ve done a lot for myself to live and sustain a healthy life. I’ve stayed positive and work hard to keep healthy.
Unfortunately, at about 17 weeks pregnant after urine tests showed elevated levels, during an MRI they found pheo had come back on my pancreas, two tumors on my right hip and a tumor on my right femur. They’re planning to try MIBG therapy which is still in clinical trials this year. They are not sure if it will be able to pick up the tumors in the bones, however, I’m super hopeful! My biggest downside is I will have to stay away from my baby for a certain amount of time (they are looking into exactly how long, due to the contrast) which is honestly the only thing that I’m focusing on – my baby. This cancer will pass and go away like it always has and we will continue to thrive and move on!